Nexus Awareness – CFS/ME Awareness Week.
This week we are kicking off a new feature where we aim to highlight some of the ongoing mental health, disabilities and other such health problems that surround those both in and around the industry with Nexus Awareness.
We have been inspired by many blogs around us, such as Hope Through Music who give an amazing platform to individuals who suffer from mental health conditions and allow them to share their experiences with a wider audience in the hope that it can help others.
So, to kick things off, we have CFS/ME Awareness Week, which this week sees groups and individuals alike wearing blue to raise awareness for the illness itself. This is a personal one to myself (Mike, Nexus founder) as I was recently diagnosed with this debilitating illness back in September. I have provided my story towards the end of the article, in order to not remove the light needing to be shone on this topic. So please feel free to read all the way through if you wish for a medium-sized, in conclusion(ish) personal account, away from just the facts and figures.
CFS/ME is short for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. With CFS being the prefered term for the UK. However, there is an ongoing debate around a suitable name for the condition that fairly represents the illness itself and the name looks set to change again in the near future.
According to the NHS UK, Chronic fatigue syndrome (CFS) is:
“…a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness“.
Although extreme tiredness is a common symptom, it is not the only one that comes with this illness. There isn’t just one single test alone that can diagnose an individual with CFS/ME. It is diagnosed by your symptoms and by ruling out other conditions that could be causing your symptoms.
CFS/ME is considered to be rare amongst the wider population. To demonstrate this, the below research is from the ME Association (What Is ME? n.d. Part 3: Epidemiology) and is composed of current, available information whilst also taking into account the current consensus reached by the Chief Medical Officer on CFS/ME (CFS/ME Working Group 2002).
“A prevalence rate of at least two per 1,000 of the adult population – although the actual figure is probably closer to four per 1,000 (Jason et al 1999), i.e. 0.2-0.4%. This means that somewhere between 150,000 and 250,000 people in the UK have ME/CFS. A general practice with 10,000 patients could have up to 40 cases of ME/CFS“.
CFS/ME is a complex illness that can, at times seem very difficult to understand and grasp. We have provided a video below from NHS Choices which helps to outline CFS/ME and goes some way to explaining the various symptoms, strands, complications in both health, work, life and social occasions that can be connected to an individual who suffers from CFS/ME.
If you wish for more information on the illness, including where to donate to various charities, please follow the links provided below.
ME Association – What Is ME?
NHS UK – CFS
My Experience – Mike (Nexus Founder)
CFS/ME is a very personal subject for us here at Nexus, as I (Mike, founder of Nexus) have been previously diagnosed with this illness in September of last year. It has been explained to me that after looking at my symptoms, the timeframe for these symptoms and the severity of them, that I may have had CFS/ME since 2007-2009 due to a personal loss within the family which caused untold amounts of stress.
Initially, I put the feeling down to laziness. For all of the symptoms that came with it over the years, there never seemed to be an answer as to why I would feel the way that I did.
After a few years, the pain became normalised to me and I spent most nights falling asleep with either a hot water bottle or an ice pack to ease the pain in my neck, back and head. I suffered excruciating migraines, loss of balance, memory issues, fatigue, overwhelming tiredness and constant aches and flu-like symptoms. Still, I put this down to laziness and pushed on, later going through college and then Uni, achieving a 2:1 upon graduation, which to this day is something I am proud of considering the place that I was in at the time.
This way of doing things, the headlong, charge, full steam ahead approach, lead me to continue pushing myself where eventually I ended up in hospital in September with a pain that was the worst I had ever felt in my head. The hospital suspected that I had a brain haemorrhage or even a tumour, and a multitude of tests was undertaken to rule this out.
A few days later, I rated the pain as ten out of ten after taking what was probably 30 steps to an MRI machine and back again to my wheelchair (as I had issues walking, showering and dressing once the pain had come about and landed me in hospital), later having what has now been put called an “Episode” by myself and my Neurologist, where my heart skipped many beats in a matter of seconds, which put me in a very bad way. Upon further thought, this ties in nicely with the pain after going to the MRI machine, as I was hastily taken back to the ward that I was on.
I have no recollection of what happened during the 15-20 minutes in the room on the ward at all. After naming my pain as 10 out of 10 to the nurse, taking a sip of water and a painkiller, I remember very little until I came back around. All I know is that I felt a pressure and pain in my head that I have never experienced before and would find it difficult to even explain, I took a sip of water so the nurse could see that I could swallow painkillers, I took painkillers, then after that? I haven’t a clue in all honesty. Not until I came back around did I question what had just happened. All I know is that I went a colour past grey (according to my family), staff were gathered at the door ready to rush in, and there were a lot of worried faces (I don’t like to do things in halves, honest). What had happened is that my body was trying to mitigate the level of pain that I was in, which in turn led my body to have this “Episode“, which is a nice way for me to identify my limits when I’ve overdone it… I would have prefered a text message, but I can’t be that picky.
All humour aside, me telling this how I am is to make people aware that CFS/ME does not just consist of the usual stigma of just “Oh, that person gets really sleepy“. It is something which needs to be taken much more seriously and requires sensitivity and a want/will to understand. I’m lucky now that I am a lot better than I was in September. I still have a lot of mobility issues (if that is the right word?) in the sense that I struggle to go for days out without paying the price a few days later (even hours), I even look alright most of the time (another stigma), but this isn’t an illness that affects how I look, but rather how I feel. I am now able to walk on my own, although this wasn’t instant when leaving the hospital, I can dress myself and shower. Others are not always so lucky.
It has gone on to shape my life in a completely different way to that of which I would have wished. Everything that I had known previously and learnt has had to be re-evaluated and looked at as it is a debilitating illness. Socially, it makes problems out of what should be normal activities like meeting friends or going to gigs. It constantly challenges me both financially and mentally, with the blog and various other avenues being a fantastic outlet to continue in helping artists where I can and when I can.
Lastly, I have the most fantastic group of friends, a loving and caring family and a tolerant, patient and equally caring girlfriend (you are included in the family, but just to make it clear… You’re welcome Chels…). I don’t think, in fact I know that I would not be where I am today without them. And we have been through trials aplenty, as most of you would have. But it is this bond between these people which I value tenfold, and always helps me to focus on what lay ahead. I am lucky to know that any challenge can result in failure in the end, as long as the intention to succeed is there, to begin with. But this is how I think, and isn’t universal to all suffers, it probably isn’t even healthy (in fact, I know it isn’t, and yes Matt, you have told me many times).
I still have a long way to go in my journey. Having recently looked at Nutrition and the way in which I exert energy through something called Alexander Technique with an individual named Jackie Bond in Basingstoke (every mention here, by the way, is not paid promotion etc, it is because it has genuinely helped me and I share this to help others). It has changed the way I do a lot of things and has taught me to use less energy within myself and remove bad habits from my life, posture and day to day movements. At the end of the day, I will steal any little gains I can get.
I am currently seeing a counsellor to try and ease my mind of the pressures that carrying various life experiences that life has given me. Changing my mind frame is one of the hardest things I have ever had to do. As after 25 years you sort of feel as if you’re doing alright with how you think, and challenging myself to have a more mind, body connection is hard. I replaced feelings with ideology in order to get around how I felt through various challenges that I have been met with when there was no clear answer. This is a challenge in itself, to challenge my opinions and ways that I do things, but is interesting nonetheless and I feel it is lifting weight and affording me some energy back to really try and grasp good days as and when I can (I hear my councillor nodding her head).
I have a meeting with South Coast Fatigue on the 15th May where I hope to continue my progress and will look to share anything that I can to help other sufferers. Also, to hopefully help people have an insight into a world where 95% of the time I put across the fact that I am alright. Hopefully, this allows you to see that I am able to open up and share my experiences, in hope that someone reading this will do the same and be able to help others and themselves.
On that note, I will be aiming to do more in raising awareness for CFS/ME going forward through the blog. Also hoping that many artists, industry folk and people from outside of the industry can join me in this worthy cause.
To show that it truly is something that needs to be spoken about, I am aiming to do a piece regarding my experiences and put this out at some point in the near future to show people that despite those hardships, that this illness has and continues to give me, it is not something which I am ashamed of sharing.
If you have CFS/ME as well then please feel free to reach out to the blog, always know that you are not alone and I am always interested in connecting with people who have had similar experiences. If we all took the time to recognise a small portion of one another’s problems, then in my opinion anyway, we will go a long way to removing the social stigma surrounding mental health, disabilities and general health concerns.
Thank you for reading. And, again, if you wish for more information on the illness, including where to donate to various charities, please follow the links provided below.